Sunday, November 28, 2010

Sunday, November 28 - Day +46

Collin has been doing well since coming home two weeks ago. He's off the TPN, and the Broviac has been removed from his chest. His mediport will be inserted December 6. He is tolerating his tube feeds at 45 mL per hour without difficulty, so now I can just run them over night while he sleeps and he doesn't need to be connected to the feeding pump during the day. He is eating and drinking more, and while I'm not sure that he's eating enough to sustain him without the tube feeding, he's headed in the right direction. So far I have kept him on the nectar-thick liquids since he does so well with them, but he is now handling all food textures well again as long as the bites are small. He is crawling all around, pulls himself up to stand, and now bends his knees to sit back down (instead of dropping back onto his rear end). He has not vomited in a while, and the diarrhea finally seems to be improving. On Friday he had his first tub bath in seven months. At first he was terrified, but I held on to him until he was comfortable, and by the end of the bath he was having fun splashing the water the way he used to. He is growing eyelashes, and they are starting to darken. His eyebrows and hair are also starting to grow in, but so far they seem to be coming in white. I have been told his hair may come back a different color or texture, at least at first, and I can't imagine seeing him with hair that is a different color than what it used to be. The corneal abrasion on his right eye seems to be healing nicely, and he is getting used to having his left eye patched again. He has had a slight runny nose over the last few days, but thankfully has not had any fever.

Our schedule is now filling up with appointments for outpatient occupational, pysical, and speech therapy. These appointments, as well as the occasional clinic appointment, are really the only times Collin leaves the house. Since it is the beginning of flu season, we don't want to chance him getting sick. It is very difficult to get him to keep a mask on when we are out, although I can't really blame him! He will also receive therapy services at home through Early Intervention soon. I think he will make good progress, especially now that he won't have hospital stays for chemo to hold him up!

Thursday, November 25, 2010

Thursday, November 25 - Day +43...Thanksgiving

This year I am incredibly thankful for so many reasons. I am thankful to be able to celebrate this Thanksgiving with my husband and BOTH of our children. My heart goes out to the many parents who are facing this holiday season (and life) without a child because of cancer. Please keep them in your prayers.

I am thankful for our families, who have been so loving and supportive throughout the past seven months. We love you all so much!

I am thankful for our friends, old and new, and even the ones we haven't met, who have prayed, visited, fed us, and sent messages of support, encouragement, hope and love. Thank you for helping hold us up throughout the last seven months!

I am thankful for the doctors, nurses, and therapists who have cared for us, educated us, cried with us, and celebrated with us. You have become like family to us, and we are forever grateful to you for everything you have done for us!

Happy Thanksgiving everyone!

Tuesday, November 23, 2010

Tuesday, November 23 - Day +41

Collin was added on to the surgery schedule today to have his Broviac removed. We had to check in at Admissions at 9:30 am, and we didn't get home until nearly 4:30 pm, but despite spending the day waiting, things went pretty smoothly. The actual removal didn't take long at all. It took Collin a little longer than usual to wake from the anesthesia, and when he did, he was agitated for a while, which wasn't the norm for him. But after a while I was able to offer him some juice, and he was able to keep it down. Once the IV was removed from his arm he was happier, and we were able to go home. He only has some little steri-strips on his chest, which will eventually come off by themselves, and on Friday he will be able to have his first tub bath since April! I can't wait to see his reaction! His mediport will be inserted on December 6.

Monday, November 22, 2010

Monday, November 22 - Day +40

Collin's clinic appointment this afternoon went very well. He was in a very happy mood, and was waving to everyone who said hi to him. Our oncologist said this was the best she's ever seen him since she met him in April. He waved to her when she came into the exam room, and even held onto her hands and walked around the tiny room with her. Despite the fact that the nurse got one of the single-lumen repair kits and was going to get creative with it to fix Collin's line, the doctor decided to just have it taken out since he's doing so well. She said she usually ends up just taking them out because they get a hole in them or get infected, so she wanted to remove Collin's before it becomes infected. Since he had just eaten lunch and didn't have the empty stomach needed for anesthesia, the surgery to remove the Broviac will be done tomorrow morning. I am surprised to realize that I have mixed feelings about this step! I remember how much I hated the Broviac in the beginning, and hated Collin being hooked up to IVs all the time. But somewhere along the line, without even realizing it, I came to appreciate and rely on the Broviac because it meant Collin didn't have to be stuck with needles all the time, and it allowed him to easily have all the medications he needed. Taking care of it, doing the dressing changes, flushing both lumens every day, etc. became routine. So as much as I am excited to finally say "bye bye tubies!" (which Collin was repeating during his sponge bath tonight) and see Collin finally get to have tub baths again (one more step toward normalcy!) there is a little part of me that will miss the darned thing! Of course, in a few weeks, after he is healed from the surgery tomorrow, he will get his new mediport put in so that blood draws and eventually maintenance chemo can be done easily, but from what I understand the port will require less care, and he'll still be able to get in the tub with it!

Saturday, November 20, 2010

Saturday, November 20 - Day +38

The last few days have gone pretty well. We are seeing how Collin does without the TPN, and already I notice a difference. The vomiting and diarrhea have decreased, and he has more interest in trying to eat, especially lunch and dinner (I don't think he's very hungry for breakfast since he gets the tube feedings over night). I have slowly increased the rate of the tube feeds, and he is up to 30 mL/hr now. He's getting two cans (250 mL each) overnight, which is what he used to get; it's just still at a slower rate, but I think soon he'll be back to the 50 mL he was used to. Now that he's not getting the TPN, it's nice not having to carry two portable pumps over my shoulder in the evening as I carry him through the house, and once he's back up to the 50 mL/hr, I can just give him the tube feeds while he is sleeping, so I won't have to carry around the feeding pump either.

Wednesday Collin started back up with the outpatient OT. Thursday the Early Intervention team came back to do an assessment so they can get home therapy services started for him as soon as possible. Today we waited for an hour and a half for the ophthalmologist to take a five minute look at Collin's eye; thankfully the abrasion is healing nicely, and we can now go to every three hours with the ointment (instead of every two hours). The ophthalmologist talked about injecting Botox into the muscle that is causing Collin's right eye to turn in so much. About a week after the injection, the muscle would relax enough to allow the eye to turn out. The effect would last for about three months, and would enable the right eye to see better when the left eye is patched. The injection would be given under anesthesia, so it may have to wait until the next MRI, which will be done in January.

Last night as I was doing the nightly flush of the Broviac lumens, I noticed one lumen has a small hole in it. Of course it wasn't the one that was used to draw labs earlier Friday in the clinic, where it could have been addressed during normal daytime hours. I called the hem/onc unit desk and spoke to our nurses there, because obviously a hole in the line is a possible route of infection. One of the attending physicians was right there, and he consulted Collin's primary oncologist. Since Collin didn't have a fever, and because most likely at that time of night the ER pediatric surgical residents wouldn't necessarily be familiar with how to repair the line, I was told to chloraprep (clean) the outside of the lumen, flush it with heparin, clamp the line above the hole, and tape sterile gauze around it, then come into the ER early Saturday morning so it could be repaired and he could have blood cultures taken and be given a single dose of IV Vancomycin (antibiotic). So Collin and I went to the ER this morning. We waited for quite a long time for the pediatric surgical team to finish with an appendectomy; then they came to see us. After making a few calls to central supply, the OR stockroom, etc., they determined the hospital doesn't have a repair kit for a double lumen catheter, only single lumen catheters. That the hospital doesn't have a repair kit for a double lumen catheter that is commonly used in hem/onc patients, that was put in by them, whether they don't stock it or it doesn't exist, blows my mind. Since the only other option would have been to take Collin to the OR and surgically replace the whole catheter, they told me to keep it clamped and not use it, and then talk to our oncologist at our clinic appointment on Monday. After being there for four hours, I was ready to leave at that point, but they wanted me to wait longer to make sure that we didn't need to have the IV dose of Vancomycin. I waited about fifteen minutes longer, and then told them I wasn't waiting anymore, since I had already wasted four hours of my time for no reason, it would have to be infused over two hours, the broken line couldn't be used since it couldn't be repaired, and the surgical attending didn't feel it was necessary. They had me wait another minute, and finally got the answer that it wasn't necessary, but they were to draw a blood culture before we left. Finally we were able to leave, but I was very annoyed. The surgical attending didn't seem to feel it was a big deal that we were down to one lumen if the Broviac is only being used for blood draws, but I had always been told that the lumens could be repaired when they got holes in them (which isn't unheard of for something that is used so much), and clearly the hem/onc doctors and nurses have seen them repaired before. Since Collin is only a month past transplant and has only been home for a week, and if he gets an infection that he needs to be hospitalized for, having only one lumen could make things difficult, so to me it's important.

To make matters more irritating, when I disconnected his feeding pump and flushed the feeding tube this morning in the ER as we waited, I found a leak in the end of that tube as well. It is the area of the tube that is often held kinked when giving multiple syringes of medication so that the medicine doesn't leak back out as one syringe is taken out of the tip of the tube and the next one can be inserted. Again, it's a tube used hard multiple times a day for a long period of time, so it's not surprising. It was just one more thing to deal with, so when we got home I took out the old feeding tube and replaced it with a new one. At least that was an easy fix.

On a more positive note, Collin has been crawling all around at a pretty fast clip. Last night there was a trail of toys all over the floor that he had explored and played with, and it made me smile. He's laughing a lot, especially when he's playing with Neya, and it's one of my favorite sounds!

Wednesday, November 17, 2010

Wednesday, November 17 - Day +35

As we left the hospital Saturday, the nurses lined the hallway and showered Collin with confetti. I was holding it together pretty well until then, but suddenly it hit me-we were really going home! Honestly in April, as our world fell apart, and many times along the way, it didn't feel like we'd ever make it to this point. I was overjoyed to be taking Collin home. He was pretty excited too; when I put his shoes on and put him in his stroller, he started shaking with excitement. As we walked down the hall, he was waving goodbye to everyone, and shook with excitement as he pointed to the elevator. It was a joyful sight!

We've been home for five days now. Getting home, unpacking and putting things away, getting organized, getting into a routine, meeting Collin's care needs, and trying to take care of normal household chores has been challenging. I am so thankful that my Mom was here to help; I don't know how we would have survived without her! As much as I wish we could go back to the way things used to be now that we're home, it isn't possible. It's a new "normal" for us now.

Here is an idea of our routine since coming home:

6:00 am-wake up, get myself ready for the day
7:00 am-disconnect the TPN (IV nutrition) from Collin and flush both lumens of the Broviac
-get Collin dressed and ready for the day
-wake Neya and get her dressed and ready for the day
8:00 am-put antibiotic ointment in Collin's right eye for the corneal abrasion
-breakfast for Neya
-pack lunch for Neya
8:30 am-Neya to bus stop
8:45 am-prepare and give Collin his morning meds, and disconnect feeding pump (oral nutrition)
-breakfast; try to get Collin to eat something
-clean up from breakfast
10:00 am-put antibiotic ointment in Collin's right eye for the corneal abrasion
12:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
-lunch; try to get Collin to eat something
12:45 pm-prepare and give Collin his afternoon meds
1:00 pm-take TPN and vitamin vials out of the fridge to come room temperature 4-6 hours before use
2:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
4:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
-help Neya with homework
4:45 pm-prepare and give Collin his early evening meds
-get feeding pump ready for the night, connect and start 16 hours of tube feeds
5:00 pm-get TPN ready for 12 hour infusion
6:00-put antibiotic ointment in Collin's right eye for the corneal abrasion
-dinner; try to get Collin to eat something
7:00 pm- connect IV pump and start 12 hour TPN infusion
-sponge bath for Collin
-shower for Neya
-shower for me
8:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
-prepare and give Collin evening meds
-kids to bed

Between my mom and Bill, they have been taking care of most of Neya's needs, straightening up the house, doing laundry, and preparing meals. At any time throughout the day, I also have to clean up multiple episodes of vomit and/or diarrhea, keep a toddler occupied and happy or get him to take a nap, handle temper tantrums, and fit in therapy, ophthalmology, clinic, and/or home nurse appointments. My mom and I were joking (sort of) that we need a house keeper like Alice from the Brady Bunch for a short time. Things will get easier as we don't have to use TPN anymore, or do the eye ointment, or clean up vomit/diarrhea, etc. By the time I get into bed at night, I can't keep my eyes open for long; and even once I fall asleep, it doesn't last all night because Collin usually wakes up at least once or twice. And as frustrating and overwhelming as things can get, I know that if I were one of the moms who doesn't get to bring their child home, I'd give anything to have all of this chaos to deal with, so I'll keep it and do the best I can. But please bear with me if it takes me a while to return a phone call, answer an email, update the blog, etc. Thanks!!!

Thursday, November 11, 2010

Thursday, November 11 - Day +29

After I learned of Tuesday's loss, I couldn't bring myself to write an update that night that included discussion about our plans to go home. It's not right that a mother had to leave here knowing her son would never be home again. Whenever I hear of another child who loses the fight against this evil thing called cancer, it sends me into a tailspin. I feel this sense of sick dread. It's heartbreaking and depressing. It's my biggest fear. And yet, despite the fact that the world has come crashing down around someone, life keeps moving for the rest of us. It just isn't fair.

Over the last week Collin has been more playful and verbal than he was as he recovered from the VOD. His sense of humor has returned, as has his ability to throw big dramatic temper tantrums. But (most days...I'm only human) even the behaviors that may have gotten under my skin at one time now make me smile, because I'm just thankful that he is still here, and able to do more than just lay in a bed. 

Collin's labs have been exactly where they should be. His white blood cell count is increasing on it's own, which means the stem cells have engrafted and are doing their job. His blood clotting factors have returned to normal, as have his liver functions. He has been tolerating the tube feeds a little better the last few days. Instead of rushing to increase the tube feeds to a volume that would sustain him and allow us to stop the IV nutrition prior to discharge, it was decided he can go home on some IV nutrition and we can continue to increase the tube feeding a little slower so he won't throw up as much at home. Twelve hours of IV nutrition and tube feeding around the clock will make some things more challenging, but it's time to get Collin back home into his own environment so he can keep moving forward. Although he will be ready for discharge by tomorrow afternoon, logistically it will be easier for us to go home Saturday morning, so that's the plan. 

It's hard to believe this is our last scheduled admission; in April it seemed like this was an impossible dream, and that it would take forever to get to this point (if we would even reach it at all), but looking back, the last seven months have really gone by quickly. And in that time, I have met so many amazing people who have become like extended family-the doctors, nurses, therapists, aides, social workers, unit secretaries, and housekeepers who have been beside us in our darkest days, and have shared our joy at each improvement, no matter how small. I know they get payed to do the jobs they do, but no amount of money can make anyone genuinely care like they do. Thank you hardly seems like enough, but I don't know what else to say. We have been so blessed throughout this journey.

Tuesday, November 9, 2010

Tuesday, November 9 - Day 27

My heart is heavy as I write this. The cancer warrior I wrote about on Sunday got his angel wings tonight. He was too young, his life is over way too soon. Please keep him and his family and friends in your prayers. Hug your children, and anyone else who is important to you, and always remember to tell them how much you love them.

Sunday, November 7, 2010

Sunday, November 7 - Day +25

The last few days have been fairly quiet. Collin's eye is bothering him a whole lot less now that it is sutured. I'm not even sure he realizes that it is sutured; the corner that his eye turns to is still open, so he can still see. He's not trying to rub his eye as much as he was, so we take the elbow immobilizers off for periods of time, especially when we are right next to him and can stop him if he does try to rub his eye.

In order for Collin to be discharged from the hospital, he has to be able to tolerate tube feedings so that he can be nutritionally supported at home. His stomach hasn't had anything in it for weeks, so the process of getting him off the IV nutrition and back onto oral nutrition is a bit of a challenge. Prior to this hospitalization, Collin was getting two cans of formula overnight, a total of 500 mL, at a rate of 50 mL per hour, as well as whatever he ate during the day. Right now, Collin has little interest in eating, possibly because his ability to taste has been affected by the chemo since it kills off taste buds. So, until his interest in eating returns, Collin will again get the bulk of his nutrition through his feeding tube. The tube feeding was started at a slow 10 mL per hour around the clock to get his stomach used to being used again, and then it is slowly increased every few days. Today it was increased to 15 mL per hour. Unfortunately, vomiting is a regular occurrence as his stomach re-adjusts. It can happen anytime, without warning. I'll spare the details, but I am so hoping that by the time we go home, the vomiting will not be an issue, either because his stomach has adjusted, or the anti-emetics are helping!

There is another warrior on this unit that needs a lot of prayers, the son of a friend of my in-laws. He should be enjoying his senior year of high school, but instead he is here fighting for his life. He's not doing so well, and probably doesn't have much time left. Please keep him and his family in your prayers as they face the unthinkable. Thank you.

Thursday, November 4, 2010

Thursday, November 4 - Day +22

After my last entry Monday night, Collin's fever increased a bit, and he was put back on antibiotics. He also had a few episodes of diarrhea over night, so another stool culture was sent, which came back positive for c-diff yet again (he just got over his third bout of c-diff, this is now the fourth time he's had it). All of the blood cultures came back negative for infection, so the antibiotics were stopped yesterday.

On Tuesday, an ophthalmologist came to look at Collin's right eye because the corneal abrasion didn't seem any better even though he had been on the antibiotic eye ointment for seven days. Since the eye does not blink or close all the way when Collin is sleeping, it has become too dry to heal, despite using ointment and eyedrops to lubricate it. The abrasion is pretty deep, and if it doesn't heal soon, it will start to develop scar tissue that will permanently impair the vision in that eye. The ophthalmologist that came Tuesday wanted to consult the other ophthalmologist that has seen Collin in the hospital before making a decision about how to treat the abrasion because of the turning in of the same eye. Both doctors have examined Collin, and have decided to suture his right eyelid part-way closed to allow the abrasion to heal. By closing the eyelid halfway, there will still be a tiny space at the inside corner of the eyelid for the eye to see out of; that way when we patch Collin's left eye, the right eye will still be able to see enough that Collin's brain won't ignore the eye, so that there will be some functional vision left when the surgery is done to help the eye turn back out (unfortunately that surgery cannot be done at the same time, because it causes inflammation which won't help the abrasion heal, and since Collin's immune system is still weak, any non-critical procedures must wait due to risk of infection). If suturing the eye partly closed is not enough to help the abrasion heal, they may have to sew the eye completely closed; but if that happens, there will be no vision left in the eye once the sutures are removed; the brain will ignore the eye after just a few weeks of not being used at all. Corneal abrasions are very painful, and Collin has been very bothered for over a week now. In order to keep him from rubbing his eye, he now has immobilizers on both arms that keep his elbows straight so that he can't reach his eye with his hands. Of course he can't do much of anything else either with the immobilizers on, and I don't want him to lose any gains he's made in other areas. He can't play, hold on to a walker, or feed himself, etc. with the immobilizers on, but if they are taken off, he quickly tries to rub his eye. The entire situation is very frustrating, and again I'm left wondering why Collin has to be thrown so many roadblocks on his road to recovery. I knew and accepted that hearing loss from the chemo was a possibility, but possible vision impairment or loss never entered my mind. I am hoping for the best outcome possible at this point, and I'm sure he can learn to adapt to having functional vision in only one eye if it comes to that. But none of this is what I wanted for my child. It's just not fair.

Despite the eye pain, the immobilizers on his arms, four small episodes of vomiting, and a tiny fever that landed him back on antibiotics yet again, Collin had a great day today. He was more vocal than he's been in a few weeks. He played with his nurses and therapists. He smiled and laughed a lot, and had us doing the same. The scan of his liver showed the blood flow is now going in the right direction. He is almost back to his pre-VOD weight. His labs are good. The attending physician today said there's not much keeping him in the hospital now; as soon as he is able to tolerate nutrition either by mouth or feeding tube instead of intravenously, he can go home. So this evening his tube feeds were re-started with the hopes he won't have a lot of vomiting as his stomach readjusts to being filled. With any luck, maybe we can go home by the end of next week!

Monday, November 1, 2010

Monday, November 1 - Day +19

Overall, today was a good day. Collin's morning dose of Risperdone was held to see how he would be without it; he was more awake, alert, and interactive today. He smiled, laughed, played a little, and watched some of his favorite music videos. And, he didn't have any of the tremors he had last Monday. He had a little juice from a spoon this morning, but the rest of the day didn't seem to have any interest in eating or drinking anything. His dose of Morphine was reduced, and he still seems comfortable. His weight and belly circumference have come down a little more, and most of his labs looked pretty good today. Unfortunately tonight he is running a low grade fever, so the usual blood cultures will be drawn, and he'll most likely be started back on the IV broad-spectrum antibiotics.